Beyond Batten Disease Foundation

Join us in our mission to find a cure for Batten disease and prevent hundreds of similar rare genetic diseases that claim the lives of thousands of children every year.

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  • About Us

    • About the Foundation

      • Staff
      • Board of Directors
      • Development Board
      • Youth Leadership Committee
      • Founders Circle
      • Internships and Service Hours

    • Funds

      Hugs for Hudson

      Read Press Release »

      Tyler's Mission

      Learn More »

      Bind Up Batten

      Learn More »

      Chase The Cure

      Learn More »

      Rare Sisters

      Learn More »

    • BBDF’s Role and Impact

      • 2016/2017 Annual Report
      • Overview
      • Accomplishment Timeline
      • Latest Update
      • Video Updates

    • Contact Us

      Beyond Batten Disease Foundation:

      PO Box 50221
      Austin, TX 78763
      Phone: 512-275-2600
      Toll Free: 1-877-6BATTEN
      Fax: 512-637-6333
      info@beyondbatten.org

      Submit an Inquiry »

  • Understanding Batten

    • About Batten Disease

      • What is Batten?
      • Diagnosis/Symptoms
      • Prognosis
      • Screening
      • Living with Batten

    • Family Stories

      • Family Videos
      • A Mother’s Story
      • Share your Story
      • Batten Map

    • Contact Us

      Beyond Batten Disease Foundation:

      PO Box 50221
      Austin, TX 78763
      Phone: 512-275-2600
      Toll Free: 1-877-6BATTEN
      Fax: 512-637-6333
      info@beyondbatten.org

      Submit an Inquiry »

  • Research

    • What We Know

      • State of the Science
      • CLN3 Gene
      • Screening

    • Foundation Driven

      • Our Strategy
      • Research Partnerships
      • Research Activities

    • For Researchers

      • About Funding
      • Forms and Instructions
      • Resources

    • Contact Dr. Danielle Kerkovich

      Danielle M. Kerkovich, Ph.D.
      Phone: 202-812-6462
      Email Danielle

  • Get Involved

    • OVERVIEW

      • Donate
      • Create a Fundraising Page
      • Create a Fund
      • Volunteer

    • UPCOMING EVENTS

      • EA Sports Camp for Girls
      • BBQ for Batten
  • Be Project

    • Introducing the

      BBDF BE Project

      a campaign to fund the treatment for Batten disease

      Read More »

    • Who Will You Be?

      • BE an Amazon
      • BE the Change
      • BE a Connector
      • BE a Donor
      • BE a Hero
      • BE the Hope

    • BE RECOGNIZED

      • Be First Donors

    • Contact Us

      Beyond Batten Disease Foundation:

      PO Box 50221
      Austin, TX 78763
      Phone: 512-275-2600
      Toll Free: 1-877-6BATTEN
      Fax: 512-637-6333
      info@beyondbatten.org

      Submit an Inquiry »

  • BBDF Blog

Volunteer

Beyond Batten Disease Foundation  ⁄  You Can Get Involved in Several Ways  ⁄  Volunteer

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Contact Us

  • 512-275-2600
  • info@beyondbatten.org
  • PO Box 50221
    Austin, TX 78763
  • Mon to Fri - 8:30am to 5:30pm

A 501(c)(3) tax-exempt organization

What’s New?

  • Calling all Heroes! April 24, 2018
  • BBDF Welcomes Chase the Cure April 13, 2018
  • Batten Families Gather at TCH for Research Update March 21, 2018

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